Interstitial Cystitis Chatter: A Qualitative Evaluation of Bladder Instillation Online

Objective: To qualitatively assess the perception and experiences of bladder instillation for interstitial cystitis among women on Reddit, a widely used anonymous social media platform. Methods: "r/interstitialcystitis," a Subreddit with > 27,000 subscribers, was queried for bladder instillation among women with interstitial cystitis in November 2023. Posts were analyzed qualitatively by three independent researchers. Grounded theory principles were applied to derive preliminary themes. These themes were then used to develop emergent themes. Results: Sixty-three posts with 637 responses published between 2022-2023 were analyzed. Qualitative analysis yielded four themes: (1) IC/BPS anxiety and depression, (2) limited treatment options for IC/BPS pain, (3) exhausting all IC/BPS treatment options before bladder instillation, (4) bladder instillation ineffectiveness for IC/BPS pain. Three emergent concepts were derived: (1) a prevailing sense of desperation for relief among women with IC/BPS, (2) women are fearful and apprehensive about bladder instillation, (3) a perception of bladder instillation as the final recourse for women suffering from IC/BPS. Conclusion: This study represents the first evaluation of bladder instillation as a therapeutic from a social media community focused exclusively on IC/BPS. These results capture patient's experiences with nonurological associated syndromes and indicate a role for physicians to address mental health concerns in patients with IC/BPS, in addition to opportunities to improve patient education on bladder instillations.